The Effect of Family Empowerment Model on Quality of Life in Children with Epilepsy in South of Iran, 2018: A Randomized Controlled Clinical Trial

Objectives Epilepsy is a chronic disease of the nervous system, which remarkably affects children’s performance and behaviors. Epileptic children are at greater risk of cognitive and behavioral disorders compared to healthy children. In this regard, a variety of factors associated with this disease may affect the patients' families. Materials & Methods The present study was a randomized controlled clinical trial, which aimed to evaluate the effect of family empowerment on the quality of life in epileptic children referred to the concerned centers (the Bessat Clinic affiliated to the Kerman University of Medical Sciences and Shiraz’s Imam Reza Clinic). The participants, who were 80 parents with epileptic children meeting the inclusion criteria, were assigned into two experimental and control groups. In this study, the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE) was used to collect the required data from the parents. Results The studied children’s age ranged from 4-8 years. These results revealed a statistically significant difference between the two groups regarding the level of changes in all dimensions, indicating that the experimental group’s mean score of quality of life in different dimensions increased (P <0.05 in all dimensions). Conclusion The implementation of the family-centered care plan by care providers, based on patient-family support relationships, the detection of their strengths and weaknesses, prioritization of the provided services, and effective interaction with the health team would increase the family and staff’s satisfaction, reduce the costs, and improve the outcome of the disease.


Introduction
Epilepsy is a chronic disease of the nervous system, The prevalence of the disorders may be associated with decreased child growth, lifelong disability, and dependency, as well as increased economic costs (5). According to the Guideline Committee of the American Epilepsy Society, 50000-150000 Americans experience epilepsy annually. The disease leads to death in <a3% of children (6).
Epilepsy is one of the most severe neurological disorders, requiring long-term treatment due to its chronic nature (7). Epilepsy is a chronic disease affecting children's performance and behaviors. Epileptic children are at greater risk of cognitive and behavioral disorders than healthy children (1). A variety of factors associated with this disease may affect the patients' families. The families' routine daily activities, which were to meet the needs of the family members, may shift to activities meeting the needs of the child suffering from the disease (8). Nowadays, considering the patient's family is one of the most critical components of patient care since the family is in charge of providing care for the patient and plays a crucial role in accelerating the patient's recovery process. Family Iran J Child Neurol. Autumn 2021 Vol. 15 No. 4 is an integrated system, and one family member can threaten the whole system, thereby arousing fear, weakness, loss of hope, and physical and mental exhaustion in other family members (9).
Family is considered a crucial component of child care program during the disease. In this regard, the family members' involvement plays a significant role in child care since children are directly dependent on family members in taking self-care.
Parents' involvement in the care procedure of a hospitalized child can be a challenging experience for the parents and the members of the medical team (10). Accordingly, family-centered care is an innovative approach to planning, implementing, and evaluating health care. It is underpinned by mutually-beneficial cooperation among patients, families, and health care providers. The four main components of family-centered care are respect, information reception, involvement in care, and collaboration (11).
The concept 'family-centered approach' was first used in the 1950s when Carl Rogers introduced the client-centered approach. In a client-centered approach, the clients, not service providers, manage and control the disease. In the same decade, Beret and Scherz introduced the family-centered service to provide services to children and their families (12). Training parents and their involvement in the care procedure during the hospitalization, especially at discharge time, is of paramount importance in this approach. Previous studies have indicated that developing a treatment plan and answering questions is one of the preliminary needs of such parents. Training is one of the principles in promoting community health. In this regard, in early 1973, the American Nursing Association recognized patient and family training as a critical responsibility in the realm of nursing duties (13). There is a correlation between diseases and quality of life, and physical disorders and physical symptoms directly affect all aspects of quality of life (14). The primary goal of treatment, especially in chronic diseases, is to promote the quality of life by decreasing the side-effects of the disease, implying that patients with chronic diseases should not experience a lower quality of life (15). As seizure and epilepsy disorders interfere with motor and learning activities, they pose some problems in school activities and leisure time of the patient; hence, special attention is needed to be paid to promoting the quality of life in these children (16).
A shift in the disease treatment from traditional approaches to empowering patients and families and promoting their involvement in the care process indicate that the focus is now on health, prevention, and health training, not exclusively on disease and treatment (17). In this regard, empowerment would also result in positive self-esteem, goal-achieving ability, a sense of control over life, and hope for the future (18).

Materials & Methods
The present study was a randomized controlled clinical trial, which aimed to evaluate the effect of family empowerment on the quality of life of epileptic children referred to the concerned centers.
According to the medical records of patients referred to Bessat Clinic affiliated to the Kerman

University of Medical Sciences and Shiraz' Imam
Reza Clinic during the last six months and given the prevalence of epilepsy reported in some studies (4,5), 80 parents with epileptic children, who met the inclusion criteria, were selected and studied.
After obtaining the informed consent, they were randomly assigned into the experimental (n=40) and control (n=40) groups. The research inclusion 6. Not being a healthcare staff.
The research exclusion criteria included: 1. Parents' unwillingness to cooperate and nonreferrals of the child at due times; 2. Parents' non-participation in training sessions; and 3. Hospitalized children diagnosed with feverinduced seizure.
Sampling was performed randomly with permuted blocks. Accordingly, a number was randomly selected, and then binary blocks were selected as AB (0-0) and BA (5-9) with 40 consecutive numbers.
Group A was considered as the experimental group,

Results
In this study, 80 participants were divided into two experimental (n=40) and control (n=40) groups, among whom there were 43 (53.8%) males. The studied children's age ranged from 4-8 years, with the mean age of 5.85 ± 1.53 years. Table 1 shows the demographic characteristics of the two groups.
According to the results, there was no significant difference between the two groups in terms of their demographic features (P <0.05). In other words, the two groups were homogeneous in this regard.   Figure 1 illustrates the findings for the total quality of life scores. Data are presented as mean ± sd and med (Q1-Q3).

In Conclusion
In general, family-centered care is a care

Authors' Contribution
The first Author (Hamid Nemati) Supervised and conducted the study, has been the main researcher, who selected the cases. The third and sixth Authors